HIGH FERRITIN READING

[sunnysouth]

My iron is 71 ug/dl which the normal range give is between 35 - 150 so it is within the normal range but my ferritin is high - what could this indicate: Ferritin is 519 NG/ML out of a range of 8 - 388?

Thanks

[Madlegs1]

It is a little high, but not seriously so. Doctors don't usually worry unless it goes up over 1000.

It could signify inflammation- a bad case of flu or somesuch episode of pain.

You could donate blood a few times, if you wish to bring levels down cheaply. Each donation should reduce ferritin level by about 25 .

Have you found that the high reading has had an effect on lowering your rls experience?

Cheers.

[Eryl in reply to Madlegs1]

Inflammation could also be caused by ingesting too much sweetened foods and refined carbs. healthline.com/nutrition/su...

[Madlegs1 in reply to Eryl]

Unlikely to cause the level that would raise ferritin significantly.

[Eryl in reply to Madlegs1]

But in the cases you mentioned, could make things worse.

[Madlegs1 in reply to Eryl]

Are you talking about ferritin or rls?

[Graham3196]

There seems to be a strange and very wide range of "normals" for the ferritin level. How can the medical profession be so confused about an apparently straightforward measurement. Don't they know? Or can it really be different in different countries? This raises the problem that perhaps we are all talking about numbers that can't be compared.

In Australia the biggest Pathology lab declares "normal" to be 30 to 500ng/ml Are they experts? They are just a big American company selling path services which doesn't guarantee they knowledge. This compares to sunnysouth's "normal" of 8 to 388 Somewhere google must be able to tell us if this is the same measurement in all countries.

My daughter was anemic at a ferritin of 5 and her doctor considered treatment to be urgent, so 8 is very low. The doctor said she was surprised she was standing up. I've mentioned before that daughter was starting to get RLS every night when ferritin was at 5 but she has had no problems since her infusion.

[Madlegs1]

It is important to realise that " ranges" in labs are just their experience from their own testing. So it just reflects the results from that one lab. It does not infer "safe" numbers or even dangerous numbers.

Ferritin is an extremely complex measurement, reflecting " normal" people, but also including people who are unable to lose iron through natural means- Haemocromatosis, or having serious infections giving an " inflammation" response, to patients who have had multiple blood transfusions during major operations ( my case).

So what is "normal"?

I would consider any number between 50 and 400 to be ok. Assuming there are no symptoms pointing to any other cause.

The " Iron Disorders Institute" has plenty of good information on this subject.

Hope this helps.

[Graham3196 in reply to Madlegs1]

Thanks I will be interested to see if they are even using the same statistical analysis. The phrase "Normal" might be meaningless when it comes to comparing different countries or even different laboratories..

Several doctors and a couple of cardiologists I have spoken to recently have said that they would not expect any problems in raising the ferritin level to anything up to 1000. Above that they would like to talk to other types of specialists

I am still trying to get an infusion and was refused one by a sleep clinic yesterday. The specialist there said she had no problem with raising the ferritin to 500 but there are so many risks in the PROCESS. I asked her what on earth she meant and she included anaphylactic shock, infection at the point of penetration, and a sort of hand waving "other things" I said I accepted the 1 in one million possibility of death but I didn't see any point in arguing, because she just wasn't going to do it. We parted with the arrangement that she would confer with her associates and get back to me.

I have found a private hospital that says they will do it if I can get a referral from any GP as opposed to other hospitals that want a specialist's referral. That adds another 2 months and lots of pleading to the process of just getting in the door. So I am back GP shopping.

There is something else is going on because my anemic daughter had an infusion at a public hospital clinic that was dedicated to infusion There were 20 chairs and half of them occupied. So by crude arithmetic they might be doing at least 5000 infusions a year. Are they getting 100 patients a year with severe complications? That would be 2% I doubt it but will do some research. I presume that the infusion PROCESS is the same whether it's treating anemia or RLS???

Perhaps an interesting thing to come out of this is that the specialist claims that sleep apnea can trigger RLS so I am now booked in for a sleep test. I would be foolish not to take the opportunity to do something about the sleep apnea so I will proceed with this. She firmly believes that there is a significant chance that doing something about my sleep apnea will fix my RLS. Has anyone heard of this before?

Cheers

Graham

[Hidden in reply to Graham3196]

I know a few people who have sleep apnea and it has made NO difference to their RLS by using a mask ( forget the name) for their sleep apnea. All the mask does is give you a better sleep without the apnea's as long as your legs are still of course.

[Graham3196 in reply to Hidden]

Thanks Ellisse I will be interested to see if anyone has heard of a connection.

[Graham3196 in reply to Graham3196]

I googled "rls and sleep apnea" Sure enough the following turned up

" Sleep Med. 2017 Oct;38:17-20. doi: 10.1016/j.sleep.2017.06.023. Epub 2017 Jul 22.

The urge to move and breathe - the impact of obstructive sleep apnea syndrome treatment in patients with previously diagnosed, clinically significant restless legs syndrome."

In a sample of 28 patients with both sleep apnea and RLS. 20 reported improvements of whom nine stopped drug therapy and eight reduced the dose. My apologies to the specialist.

Her proposal is to treat the sleep apnea after a sleep study and see if the RLS improves. I disagree with the plan to treat everything serially. It will be at least five months before they will treat the sleep apnea with a CPAP machine and prove that it didn't get rid of my RLS so we can move on to an infusion. The infusion might then take 2 months to organise and three months to tell if it worked. I see no reason why we can't do both starting tomorrow and if (miracle) the RLS goes away, and I never prove which one worked, will I care?? Why would I want to risk waiting another 10 months altogether to see if an iron infusion works? I'm 73 years old and an insurance company would give me about 9 years left if I didn't have RLS. I will have to find a very old GP who understands the value of each year as you get closer.

The main point is that if you have both sleep apnea and RLS take measures to fix the sleep apnea because that will probably ease or fix the RLS

Cheers

Graham

[Sleekcat]

Hi Sunny South You are ahead of me measurements but I have Iron overload Disorder ( Haemochromatosis ) 2. Normal Iron levels are: 200mg for a woman & 300mg for a man. If you go below 100 (not sure if both women & men) you would need an iron infusion.

Visit rls-uk. org They have a paper about this. Best of luck Sleek Cat

[marsha2306]

After my iron infusion, mine was 650!